Broken Places

"Perhaps strength does not reside in having never been broken...but in the courage required to grow strong in the broken places." ~Kristen Johgen

Today started off in such a quiet and mundane way. I felt calm and I had energy to start a new day. It would not be long before the peace of the day was directed onto a new path.

Nick was still sleeping when I got up and started my morning. Puttering about the house, vacuum the rug, feed the birds, make the coffee, wipe the counters. Then I heard Nick upstairs and I realized he was throwing up. It has come to the point where my heart sinks everytime Nick gets sick now. It just represents "illness" and loss of fluids, loss of electrolytes, loss of pills just painstakingly swallowed, loss of calories and fluids eaten so slowly and carefully, loss of control over one's body and a cruel reminder that we haven't beaten this ugly troll yet!

Nick had also experienced dizziness and vertigo and threw up again before it was all said and done. We decided to call IPOP and they told us to come down to the hospital. Upon arrival, Nick had the usual weight, vital signs and blood drawing. Nick got hooked up to some IVF's to rehydrate him (even though they never seem to feel that he is dry).

Then the news came that Nick's liver enzymes and his bilirubin from today's labs were very elevated. I was actually shocked by the numbers and felt sick hearing this (one of my worst fears in this whole process) This basically confirms that Nick does have acute graft vs. host disease of the skin, gut, and now liver. The first two are bad enough, but, this just tears it! Now because the liver is involved, treatment must be started.

What treatment you ask? Well, in order to treat GVHD, the immune response must be suppressed. Basically what is happening is that the donor marrow that Nick got is attacking his skin, his gut and his liver, thinking it is foreign. The only positive in this whole scenario is that the donor marrow will also attack Nick's leukemia cells and kill them too. However, the problem is finding a balance between the graft vs. host and the graft vs. leaukemia.

GVHD is a major complication of bone marrow transplantation. The protocol Nick was on was supposed to prevent any serious GVHD. The best outcome would have been for Nick to get a "mild" case of GVHD that would not require treatment. Now that ship has sailed. It is yet to be seen if this will remain what the doctors still say is a "mild" case of GVHD. If this is mild, I don't want to see anything worse!

Back to the treatment portion of this tirade...Nick must now start on two medications (Prednisone (i.e. steroids) and Prograf) that will attempt to stop the marrow from attacking Nick's organs. If the GVHD is limited, they try not to treat for as long as possible to get the best graft vs. leukemia effect. But now that Nick's liver is showing signs of GVHD, treatment must be started. Besides all the side effects of these meds, the big down side is that while Nick is immunosuppressed he is more prone to get an infection. So he has to be super cautious and vigilant about exposures that could cause an infection. The risk of infection is so serious that they must start Nick on medications to make sure he doesn't get anything; therefore, he must also start taking big gun antibiotics, antifungals and antiviral medications just to try to prevent him from getting any number of nasty germs.

I am so sad right now I don't know what to do with myself. I just want to scream and cry and punch walls. Tonight after we got home, Nick spent time with Kate, who had been waiting patiently for us to get home. This was supposed to have been an off day, so the two had planned to get together and hang out. I know Kate was the only good medicine Nick got today. He couldn't wait to get home and he was so relieved and happy that she had waited for him. I told him of course she would wait for him! Thank you Kate for providing a brief respite in an otherwise nasty day! You are the best thing for Nick's heart and soul.

After Kate left, Nick tried to eat and drink a little. He is supposed to drink even more now to flush all these drugs from his system. (I have no clue how he is going to do this since he has been barely able to drink the minimum before all this happened! The doctor stands there and tells us that the one med can cause "renal toxicity" but, just do the best you can to drink! I am thinking to myself...."Are you nuts Mister?") Nick then tried to take all these new pills and it made him sick to his stomach and he threw up all the precious food and fluid it took him all night to eat. I just wanted to cry...how much more of this burden must Nick carry? Why, why, why??? Life sucks and it is so not fair that Nick should not have to go through this and it seems like things are just getting worse right now.

Well I guess I don't have anymore to say...I am at a loss right now. Who will fix our broken places?

“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” Henry Wadsworth Longfellow